I am so sorry that you were treated so abysmally, BBT! I am fortunate enough to be a NOVID (I've got plenty of autoimmune things going on to keep me entertained), and continue to wear my mask everywhere. I will say no to going places that I don't feel are safe (or around people who don't "believe" in COVID). It's a constant battle with newer people (old friends know my rules). I don't know what curse we fell under in 2016, but I'd like the spell removed, please. It would be nice to have people going back to actual normal, when we believed facts and trusted science. I'm tired of living in the Upsidedown. It is lonely standing your ground. Just know that there are others standing with you. xo
Thank you so much! It can absolutely be lonely but finding an online community of people who think the same way is invaluable. Hopefully we come out of the upside down soon… I keep thinking “any day now” but sadly I’m still waiting!
I'm so sorry you had to deal with that. A family member of all people should understand all that you've been through and be willing to put on a frickin mask for a short period. When you said "Unfortunately - being disabled is lonely. The pandemic has only made that worse. The isolation wears on you and it’s easy to accidentally get your hopes up when you really should know better"...I felt that so much. I'm thankful I live with my parents who are on the same page as me but otherwise I very much feel like the cheese that stands alone, a feeling only made so much worse by the pandemic. It's sad how right you are too how much compassion and caring about each other actually got WORSE after a pandemic too. The physical stuff is enough to deal with without the mental load we carry that others carelessness puts on us. Good for you for sticking to your boundaries and thanks always for sharing your story so openly.
Thank you for commenting! It really is sad how lonely being covid aware has become. My illnesses always left me a bit lonely due to my physical limitiations …. But now it’s on a whole other level. I feel like I’m existing in a completely different reality. With every year that passes people seem to be getting meaner and less tolerant of disabled people and it’s very difficult to witness.
I’m sorry they did that to you, and glad you stuck to your boundaries for your health. I’ve had similar experiences. These temporarily abled people are sure going to be shocked whenever they lose their status. Wonder how many will reflect on how they treated disabled people.
YAY for you, boundaries and self-protection. BLAH-YUCK and pity for those without an empathetic bone in their body and who will undoubtedly fail in life because they're denying themselves the full experience, making their own life untenable as they delude themselves into thinking its possible to remove or cut out the bad. It's a denial of being human, ie. untenable.
I'm blessed that I've only had a few big disappointments, and they were not as harsh as yours. As I read your piece, I was doing so many snaps, yays, and nodding. Their loss, and frankly I'm relieved for you.
Life, and mortality mean that none of us are impervious to unhappy, sad, bad, poor health things. As you know, to think otherwise is a delusion. When I started reading your post, I felt sorry for that family member because something must be wrong to have such a stringent, denial. BUT that's not your problem. Save your energy. Be clear on how many 'tries' you'll allow and then keep saying no. That's how I've protected our love bubble here.
Thank you for sharing (and for the nods, snaps and yay!)! I’m definitely going to hold to my boundary … it hurts but their behaviour is just completely out of line and if I cave they will never realize that what they’re doing isn’t acceptable. I do hope one day they come around and realize sickness isn’t something you can simply choose to do or not do.
Ugh, that's so grim, but I get it. Hurts like hell when people show you how much you really mean to them, as if having a chronic illness wasn't isolating enough, to be isolated even further by people you love is the worst, I have so been there!! Well done for standing your ground, it's so tempting (sometimes) to feel like giving in to accomodate them, but so damaging at the same time!! Sorry you had to experience this
Thank you! Definitely tempting to give in and accommodate - especially when you’re lovely as most people have abandoned you. I just remind myself that if people won’t respect my limits and boundaries then they aren’t people who are meant to be in my life.
Absolutely, hardest lesson to learn and only adds to the loneliness, but worth it to know you have stood your ground and protected yourself and your health which has to be your priority.
I'm really sorry that you had to deal with that. If this person truly cared about you and wanted to see you (not the person they want you to be), then they would be willing to protect you in any way that was necessary. I don't understand the lack of care and empathy that would allow someone to feel justified in treating someone like that. Most of my family and friends are supportive to a point. They understand that my visits will be limited and that I will be masked at all times. No one is allowed in my house. I'm positive that there is gossip behind my back but I really don't give a damn. And of course no one is willing to wear a mask themselves. They sometimes "offer" to, but they know I won't ask it of them. I know that they care about me, but that care only extends to where inconveniencing them starts. Hugs. <3
Thank you Alison. It’s really hard isn’t it? I live in a super tiny condo so I can’t meet people outside (not well enough to anyways) and as a result I insist on masking. It’s been quite eye opening to see who’s willing and who’s not willing.
Heartbreaking really. But some people have been amazing and even show up already wearing a respirator. I’m incredibly grateful for them!
I don’t know who this person is but they sound like an absolute trash human and no great loss to your life. You are a gift and your time is a privilege and anyone who doesn’t see that can get in the bin.
Sadly a family member - I am NOT in contact anymore. It’s amazing how quickly people will show their true colours when your illnesses go from moderate to severe
Their attitude will eventually come back and bite them, if not sooner then definitely later. Everyone dies, most get ill first. Stuff them and stuff their attitude, you are well rid of them and their fuckwittery.
And yeah - it’s wild to me that people are that clueless that they do will ‘do sick’ eventually. I’ve had people tell me that making that statement is fear mongering and I just shake my head. Unless you die young and suddenly - eventually you will endure some degree of sickness. Some people are fortunate and endure far less than others - but no one is the same at 20 as they will be at 80!
So sorry you had this experience, how anyone can behave like that is beyond me! I have to ask people to mask too, as I can't afford to get even a cold let alone covid at the moment, neither can my daughter. We're getting better at asking people to, but it can still be awkward. We thought people would be better at masking when ill after COVID but we seem to be back to people happily coughing and sneezing freely in crowds. I hope you get some nicer offers of masked visitors x
I thought people would be better at it too - instead many seem like they WANT to infect others. I had a conversation with someone about the importance of protecting herself in pregnancy and she actually said she wished she could cough all over everything of mine and make me sick. I’m hoping that was a one-off outburst - but I was sincerely taken aback by the aggression behind a comment like that. She was sick at the time and I was trying to help - and she just wanted to make me sick too.
I will keep trying to inform and educate in the hopes that other people recognize the value in protecting themselves (and others)!
Thank you for sharing this remarkable experience of boundary setting. I’m sorry you had to experience this kind of reaction. I remember seeing an elderly person who was very sick and frail and it made me cry. Then the time my grandad was in hospital and I realised the fragility of life. To meet someone where they’re at in this way can activate something from within and so many of us are unable to handle that. So we come across as uncaring knob instead, as if that’s the better option. Glad you’re here, writing and sharing. So we can all learn these invaluable lessons. Gifting us hope and faith and courage for we encounter such challenges 🙏
So sorry I missed this back in June! Thank you for your kind words and support of boundary setting - such an important activity and skill that I think doesn’t get the recognition it deserves.
Thank you for your lovely comment and I completely agree. You can “not do sick” all you want… sick doesn’t care and it finds everyone eventually.
I’m sorry for the situation you’re in at home. Far too many people are being forced into the workplace when they don’t really NEED to be there. It’s very disappointing that we aren’t making the most of remote options.
I did post a stack on how to avoid COVID while in hospital - but it has a lot of good tips that could work at home too. Maybe it would be helpful?
I am so sorry that you were treated so abysmally, BBT! I am fortunate enough to be a NOVID (I've got plenty of autoimmune things going on to keep me entertained), and continue to wear my mask everywhere. I will say no to going places that I don't feel are safe (or around people who don't "believe" in COVID). It's a constant battle with newer people (old friends know my rules). I don't know what curse we fell under in 2016, but I'd like the spell removed, please. It would be nice to have people going back to actual normal, when we believed facts and trusted science. I'm tired of living in the Upsidedown. It is lonely standing your ground. Just know that there are others standing with you. xo
Thank you so much! It can absolutely be lonely but finding an online community of people who think the same way is invaluable. Hopefully we come out of the upside down soon… I keep thinking “any day now” but sadly I’m still waiting!
I'm so sorry you had to deal with that. A family member of all people should understand all that you've been through and be willing to put on a frickin mask for a short period. When you said "Unfortunately - being disabled is lonely. The pandemic has only made that worse. The isolation wears on you and it’s easy to accidentally get your hopes up when you really should know better"...I felt that so much. I'm thankful I live with my parents who are on the same page as me but otherwise I very much feel like the cheese that stands alone, a feeling only made so much worse by the pandemic. It's sad how right you are too how much compassion and caring about each other actually got WORSE after a pandemic too. The physical stuff is enough to deal with without the mental load we carry that others carelessness puts on us. Good for you for sticking to your boundaries and thanks always for sharing your story so openly.
Thank you for commenting! It really is sad how lonely being covid aware has become. My illnesses always left me a bit lonely due to my physical limitiations …. But now it’s on a whole other level. I feel like I’m existing in a completely different reality. With every year that passes people seem to be getting meaner and less tolerant of disabled people and it’s very difficult to witness.
I’m sorry they did that to you, and glad you stuck to your boundaries for your health. I’ve had similar experiences. These temporarily abled people are sure going to be shocked whenever they lose their status. Wonder how many will reflect on how they treated disabled people.
I often wonder the same thing. I want to believe many will reflect…. But in reality few will.
YAY for you, boundaries and self-protection. BLAH-YUCK and pity for those without an empathetic bone in their body and who will undoubtedly fail in life because they're denying themselves the full experience, making their own life untenable as they delude themselves into thinking its possible to remove or cut out the bad. It's a denial of being human, ie. untenable.
I'm blessed that I've only had a few big disappointments, and they were not as harsh as yours. As I read your piece, I was doing so many snaps, yays, and nodding. Their loss, and frankly I'm relieved for you.
Life, and mortality mean that none of us are impervious to unhappy, sad, bad, poor health things. As you know, to think otherwise is a delusion. When I started reading your post, I felt sorry for that family member because something must be wrong to have such a stringent, denial. BUT that's not your problem. Save your energy. Be clear on how many 'tries' you'll allow and then keep saying no. That's how I've protected our love bubble here.
Thank you for sharing (and for the nods, snaps and yay!)! I’m definitely going to hold to my boundary … it hurts but their behaviour is just completely out of line and if I cave they will never realize that what they’re doing isn’t acceptable. I do hope one day they come around and realize sickness isn’t something you can simply choose to do or not do.
Sending over some strength and empathy, sitting alongside you. All of this is so exhausting on top of everything else!
Ugh, that's so grim, but I get it. Hurts like hell when people show you how much you really mean to them, as if having a chronic illness wasn't isolating enough, to be isolated even further by people you love is the worst, I have so been there!! Well done for standing your ground, it's so tempting (sometimes) to feel like giving in to accomodate them, but so damaging at the same time!! Sorry you had to experience this
Thank you! Definitely tempting to give in and accommodate - especially when you’re lovely as most people have abandoned you. I just remind myself that if people won’t respect my limits and boundaries then they aren’t people who are meant to be in my life.
Absolutely, hardest lesson to learn and only adds to the loneliness, but worth it to know you have stood your ground and protected yourself and your health which has to be your priority.
Your relatives are some ableist fucknuggets. I would have gone NC a long, long time ago, personally. Condolences :(
(You can tell them I'm judging the fuck out of them right now, if you like. It's true. I am.)
I'm really sorry that you had to deal with that. If this person truly cared about you and wanted to see you (not the person they want you to be), then they would be willing to protect you in any way that was necessary. I don't understand the lack of care and empathy that would allow someone to feel justified in treating someone like that. Most of my family and friends are supportive to a point. They understand that my visits will be limited and that I will be masked at all times. No one is allowed in my house. I'm positive that there is gossip behind my back but I really don't give a damn. And of course no one is willing to wear a mask themselves. They sometimes "offer" to, but they know I won't ask it of them. I know that they care about me, but that care only extends to where inconveniencing them starts. Hugs. <3
Thank you Alison. It’s really hard isn’t it? I live in a super tiny condo so I can’t meet people outside (not well enough to anyways) and as a result I insist on masking. It’s been quite eye opening to see who’s willing and who’s not willing.
Heartbreaking really. But some people have been amazing and even show up already wearing a respirator. I’m incredibly grateful for them!
I don’t know who this person is but they sound like an absolute trash human and no great loss to your life. You are a gift and your time is a privilege and anyone who doesn’t see that can get in the bin.
Sadly a family member - I am NOT in contact anymore. It’s amazing how quickly people will show their true colours when your illnesses go from moderate to severe
😢
You did great
Thank you 💜
Their attitude will eventually come back and bite them, if not sooner then definitely later. Everyone dies, most get ill first. Stuff them and stuff their attitude, you are well rid of them and their fuckwittery.
I adore fuckwittery. What a great word!
And yeah - it’s wild to me that people are that clueless that they do will ‘do sick’ eventually. I’ve had people tell me that making that statement is fear mongering and I just shake my head. Unless you die young and suddenly - eventually you will endure some degree of sickness. Some people are fortunate and endure far less than others - but no one is the same at 20 as they will be at 80!
So sorry you had this experience, how anyone can behave like that is beyond me! I have to ask people to mask too, as I can't afford to get even a cold let alone covid at the moment, neither can my daughter. We're getting better at asking people to, but it can still be awkward. We thought people would be better at masking when ill after COVID but we seem to be back to people happily coughing and sneezing freely in crowds. I hope you get some nicer offers of masked visitors x
I thought people would be better at it too - instead many seem like they WANT to infect others. I had a conversation with someone about the importance of protecting herself in pregnancy and she actually said she wished she could cough all over everything of mine and make me sick. I’m hoping that was a one-off outburst - but I was sincerely taken aback by the aggression behind a comment like that. She was sick at the time and I was trying to help - and she just wanted to make me sick too.
I will keep trying to inform and educate in the hopes that other people recognize the value in protecting themselves (and others)!
Wow, what a mindset! 🤯 Just don't get it. Why when wearing a mask for a brief amount of time protects someone would you not?!
Exactly! Why wouldn’t you do it? It’s such an easy thing to do. I don’t get it either.
Thank you for sharing this remarkable experience of boundary setting. I’m sorry you had to experience this kind of reaction. I remember seeing an elderly person who was very sick and frail and it made me cry. Then the time my grandad was in hospital and I realised the fragility of life. To meet someone where they’re at in this way can activate something from within and so many of us are unable to handle that. So we come across as uncaring knob instead, as if that’s the better option. Glad you’re here, writing and sharing. So we can all learn these invaluable lessons. Gifting us hope and faith and courage for we encounter such challenges 🙏
So sorry I missed this back in June! Thank you for your kind words and support of boundary setting - such an important activity and skill that I think doesn’t get the recognition it deserves.
Thank you for your lovely comment and I completely agree. You can “not do sick” all you want… sick doesn’t care and it finds everyone eventually.
I’m sorry for the situation you’re in at home. Far too many people are being forced into the workplace when they don’t really NEED to be there. It’s very disappointing that we aren’t making the most of remote options.
I did post a stack on how to avoid COVID while in hospital - but it has a lot of good tips that could work at home too. Maybe it would be helpful?
Here’s the link if you want to check it out: https://open.substack.com/pub/disabledginger/p/how-to-stay-covid-safe-when-in-hospital?r=19dk2e&utm_medium=ios